How people living with motor neurone disease and their carers experience healthcare decision making: a qualitative exploration

Abstract

Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated. Methods: Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes. Results: Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of 'decision-making' except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals' communication style influences engagement in decision making. Conclusion: PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement.

Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study

“…This contrasts with other reports where most of the surveyed persons living with MND and carers found MND information on the internet or from the local MND Association useful or very useful [ 10 ]. Consistent with other studies, we identified that receiving information early or unexpectedly could be emotionally confronting for persons living with MND [ 8 , 37 ], that information preferences sometimes differed between persons living with MND and carers [ 11 , 12 ], and that participants reported benefits from accessing information from peers [ 13 , 14 ]. Only a small number of participants in this study did not access information beyond that provided by the specialist clinic, which differs from the results of Chio et al, (2008), where 45% of persons living with MND and 17% carers did not seek additional information [ 11 ].…”

“…Embracing these communication skills would facilitate a patient- and carer-led consultation. Checking patient and carer/family information preferences and understanding (point 2) reflects recommendations in MND research [ 6 ] and may establish emotional readiness to receive information [ 7 , 8 ].…”

“…The topic guides ( Supplementary Materials ) relate to this broader study, which explored the decisions that people make, or do not make, about interventions, home modifications, advance care planning, etc., as well as how and with whom they make those decisions. Previous studies provide insight into how persons living with MND and carers experience healthcare decision making [ 8 ] and the impact of communication on healthcare involvement [ 25 ]. The opportunity to explore the existing data set through the lens of health literacy was not an a priori study aim but was identified during data collection.…”

“…Information provision needs to be person-specific since the information preferences of persons living with MND and carers can vary in timing, depth, and topics [ 6 ]. Understanding patient and carer preferences for information and healthcare engagement may reduce the emotional cost of receiving information about disease course, prognosis, and early or unexpected interventions [ 7 , 8 ]. Patient–clinician relationships can be strengthened during the process of negotiating engagement, although instruments to gauge patient preference for engagement in healthcare vary in quality [ 9 ].…”

The impact of communication on healthcare involvement for people living with motor neurone disease and their carers: A longitudinal qualitative study

“…Shared decision‐making requires the willingness of patients to engage in healthcare (Joseph‐Williams et al., 2014) and is facilitated by competent communication and cognition. However, communication and cognitive impairments are known barriers to shared decision‐making generally (Joseph‐Williams et al., 2014) and can limit the involvement of people living with motor neurone disease (plwMND) in their healthcare (Paynter et al., 2020).…”